enabling brain injury survivors to help each other

John’s Story

I am a very lucky survivor of a Subarachnoid Haemorrhage (SAH), including the consequential development of Hydrocephalus, (a build up of fluid on the brain), and of Vasospasm (the cramping or narrowing of the cerebral arteries in response to the presence of blood in the fluid spaces that normally bathe the brain.

My life changed dramatically on 12th January 2013, when following a very, very severe (thunderclap) headache, my wife took me to our local clinic.

The GP wrongly diagnosed a case of Sinusitis and sent me home with some antibiotics. Crucially, he failed to even shine a torch in my eyes to check for troubled vision in one or both eyes, or to identify some other important symptoms, such as loss of balance, dizziness, confusion, lethargy, etc.

When arriving home, my wife was not at all happy with the diagnosis and realised that I was speaking absolute Gibberish, (more so than normal some would say) and she decided to drive me straight to Kingston Hospital A&E. As is common with most A&E Departments, it can take some time before even an initial Triage is carried out, and whilst I was without doubt, the most serious emergency in the room, my bleeding was internal / invisible compared to those with obvious external trauma. This was very frustrating for my wife when trying to alert staff to the seriousness of the situation, but thankfully, she was forceful enough to grab an exceptional Junior Male Doctor who carried out the necessary initial tests that were missed at the clinic, and he very quickly took full charge. He rushed me through for a brain scan, negotiated with St. George’s Hospital Tooting for an immediate reception in the Trauma Unit and when an ambulance was not immediately available, sanctioned a private one and with flashing lights and sirens I was raced there to hopefully be saved from my near death condition.

Thankfully there were two life-saving aspects to this crisis – that I had my very strong, not easily dissuaded wife in my corner and that an outstanding Junior Doctor was on duty that day, to go the extra mile!

After more scans and tests, it was discovered that a major blood supply vessel at the very centre of my brain had ruptured and that a life-threatening operation was necessary and urgent.

The staffs at St. George’s were fantastic with my wife and one of my daughters, but pulled no punches when on my way into theatre. They urged them to take the opportunity to say some goodbyes, as my chances of survival were poor.

They were told that the mortality rate of the Aneurysm Coiling the Surgeon(s) was going to attempt was very high, and that even post-operatively the chances of a re-bleed within 24 hrs was common and that in 70% of these cases it proved fatal.

They were also warned that were I to survive I would be induced for a number of weeks in a comatose state, and there would be a number of additional milestones at 6 Months, 1 year and 2 years, before they should consider me out of danger. To then be told that survival should by no means be their sole concern, as no assessment could be made of the brain damage that had been caused, until I was brought around from the coma. They were then warned of an unknown number of possible physical disabilities, ranging from limbs, sight, hearing, speech, etc – right up to a complete vegetative state and to consider the possibility of me never being able to go home.

KEY CHALLENGES

After my ‘Thunderclap’ headache, the next thing I remember with any cognition was being on the Wolfson Ward at St George’s in Tooting, having very little recall of being moved back to Kingston Hospital for a month, (due to a Norovirus issue at St George’s) and then back again.

It was only at this point that I started to realised that something major had happened to me.

I was one of only 27 patients in this brilliant wing at St George’s, but felt like I had walked through a forest fire with 26 other people, and come through unscathed.

After 3 months of intensive rehabilitation, I thought I was ‘back to normal’ to the extent that I took a series of intense interviews for Senior IT role for a global accounting company. Then on the way back from the gym one morning I collapsed in Bushy Park, and ended up back in an ambulance being raced once more to St George’s Intensive Care.

That was 18 months ago, and since then I have finally accepted that (at 57) I should fully retire and concentrate on my health. I have accepted that I have a number of short comings in what I used to be capable of. There is fundamental damage to my Executive Functions (starting, sequencing, sustaining attention, self-monitoring, problem solving, self-awareness and stopping things.)

I continue to discover the effects of these short comings daily and continue to work on strategies to improve or compensate for them.

I am trying to do the best I can in supporting my wife in her career, trying to be the best House-Husband & Gardener I can be, am now much more available to spend time with my grand children, and am looking at other activities of interest.

Getting involved in helping other people (and their families) who have, are or may experience the effects of Brain Trauma I am beginning to do, and finding rewarding.

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